Cancer patients need more than survival | Fay Schopen | Opinion

The horror of a cancer diagnosis is unforgettable. It is the grimmest and most personal bad news. The solemnness of the doctor; the loaded pause as the nurse asks: “Is anyone with you today?”; the strategically placed box of tissues.

But this, of course, is just the beginning. People often refer to cancer as a journey, something I have no truck with whatsoever. Six years after my own run-in with the solemn doctor, the nurse and the tissues, I still haven’t come up with a glib phrase to describe my experience. Don’t get me started on battles. But it is certainly a long, gruelling process, fraught with fear and disappointment. And drugs.

Drugs to hinder the cancer; and then drugs to hinder the side effects of those drugs. Painkillers. Anti-emetics (none of them worked for me, by the way, so you may want to save yourself the bother). Injections. Antibiotics. Sleeping pills. On goes the list, until you can barely shut the doors of your medicine cabinet. Side effects are noted carefully, prescriptions are dispensed. The pharmacist is your new best friend.

The study, published in the British Medical Journal, looked at drugs approved by the European Medicines Agency between 2009 and 2013. Researchers found that overall 57% came with no conclusive evidence that they improved either survival or quality of life by the time they entered the market. In almost two-thirds of cases, there was no conclusive evidence that they improved survival rates, and in only 10% of uses did the drugs improve quality of life.

If you’re surprised by what seems to be a devastating failure of medical research, so are scientists. Carl Heneghan, professor of evidence-based medicine at the University of Oxford, said it was “hard to understand why half the drugs were approved in the first place if they provide no clinically meaningful benefit”.

I was lucky, in that sense. The treatment for my breast cancer was standard. Surgery first; then chemotherapy. The old slash and burn. I didn’t spend my time Googling drug trials; chasing stories about the latest miracle cures, contacting far-flung hospitals and begging consultants to be given a chance. I didn’t try to understand immunotherapy, or wish that I had private health insurance so I could access drugs not available on the NHS. Plenty of people do, especially with rarer cancers.

Even so, unpicking these issues is not simple. Large trials that examine survival rates are expensive and lengthy. When it comes to research on rare cancers, robust evidence is hard to gather. Then there’s selectivism – we invariably only hear about the successes; the drugs that make the grade, not the thousands that didn’t.

We have, perhaps, a skewed sense of how medical research works, and what clinical trials are for. Mainstream science reporting has never done well with grey areas. Plug “wonder drug” and “cancer” into the search engine of Mail Online, for example, and page after page of results pop up. Breast, prostate and pancreatic cancer can all, it seems, be halted in their tracks by “phenomenal” “miracle cures”, with one “wonder drug” apparently “melting cancer cells”.

Of course, these cures aren’t all they’re cracked up to be. There was a small, telling and heartbreaking sentence in the BMJ report: “Most drugs (90%) were approved for use in a non-curative setting.” The authors express concern that new drugs and treatments are often discussed and promoted as “breakthroughs” even though they may not be clinically meaningful to patients. Then there’s the often considerable cost.

So perhaps the stark statistics in the report are not something to cry over, but to consider in the wider context: this is what’s behind the curtain; this is how medical research works, more or less. Whether or not this is a good or desirable thing is arguable.

To me – and to the report’s authors – the major flaw in the clinical trials reviewed is the lack of emphasis on quality of life. Huseyin Naci, one of the report’s co-authors, said it was “very surprising … that not very many studies are looking at overall survival or quality of life as their [primary] objective”.

There are many things cancer patients are supposed to accept simply because medical professionals expect you to: chronic nausea due to chemotherapy, for example. It makes life unbearable, and that’s added to the headaches, the exhaustion, and the existential stress of not knowing if you’re going to live or die. That is why, whatever drugs come down the pipeline in the next few years, quality of life should underpin any and all medical research. For what is the point of simply surviving – not living – if your existence is a painful, feeble and miserable one?